Conclusions
What is most important is that family caregivers are sup- ported in their experience as primary carer for that person, and the burden of the caregiver experience is not under- estimated. As stated earlier, hospitalization of a relative can be a stressful and traumatic event for the family, and where possible, health professionals should be working to alleviate this stress, or at least not add to the burden. Family caregivers should receive regular information and updates on their relative’s condition and care priorities. Families should not have to seek information, nor should their level of involvement in decision-making be assumed, with many factors contributing to a caregiver’s readi- ness/willingness/ability to be involved in decision-making.
The caregiver must be encouraged to actively contribute to discussions with the health care team, if they desire, rather than passively allowing the team to make the deci- sions without their input. Health professionals, in turn, should seek to clarify the degree to which family carers want to/are willing to be involved in care decisions, especially dis- charge planning, and this should be respected. The burden of caring for a relative is significant for many family members and this must be considered sensitively by the health care team. Nurses should be encouraged to involve themselves with the patient and families beyond personal care tasks to ensure that their perspective is considered in care decisions. Access to amenities, including food and beverages, for visi- tors to the facility must be provided by the hospital as many of these family caregivers spend an extended period of time there supporting their relative.
In facilities where similar interdisciplinary models of care are utilized, working to ensure communication with family caregivers is effective is of vital importance. It is impor- tant that these aspects of care are addressed to improve the communication, support the decision-making experience of family caregivers, and contribute to a successful discharge for the patients.
Implications for practice
• The allocation of a specific member of the clinical team to be the KCP for a family is an important aspect of care and must be supported to ensure a positive experience for the family, especially the family caregiver.
• Regular reliable communication between the family and the contact person is paramount to ensure that the fam- ily is involved in decision-making and discharge planning, as these are predictors of a successful discharge for the patient.
• Family caregivers often need considerable support, not only in terms of information, but also in decision-making. Family needs should be acknowledged as an extension of the care provided to the patient.
• Nursing staffs have considerable insight and expertise to add to the discharge planning and decision-making pro- cesses because of their expertise in patient care. However the difficulties associated with nurses undertaking the KCP role has resulted in the perspectives of nurses being under-represented in care planning. This may be due to the large number of nurses, their critical role in care delivery and the logistical problems associated with their participation in the care planning process. Further work is necessary to ensure the insight and expertise of nurses is equally considered.